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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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I got into trouble today with phone calls setting my breathing back. So I called and asked for the lomotil. My docs nurse called back and said I had to try Imodium first and if that didnt work I would have to come in to see him to consider getting lomotil. I said I could not come in or do the tests that are outstanding BECAUSE I am too worse. I said if I could take more mestinon without getting diareah I would be better and beable to get to him and other appointments.
She asked if I had done the abdominal CT. I reminded her I had called to say I was worse and would have to wait as have to cut back to assure I make Christmas with family. I get he needs to know what is going on with stomack pain. I dont think he gets the diareah is classic mestinon issue. I called the local Wolfe Clinic to say I wanted to travel to THEIR movement specialist about my eyes rather than do it at the university. I found it interesting and perhaps sad that she said she had called the university and they said they had to "review my chart" before they made any appointment. Wow. Now I have had docs make appointments there before and this is not a standard answer. The possibly good part of this is that maybe I got some attention by getting the exam at Wolfe Clinic without bias and very thorough. Also to have an exam that had such troubling results Wolfe wil not do my surgery until more is known. Wolfe Clinic in Iowa is as highly recognized as the university I go to. They do research, developed proceedures that are widely know and write text books. So for them to have examined me rather than me going back there (university) may work to help my case in long run. Annie59 Last edited by Annie59; 12-17-2010 at 11:20 PM. |
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